Next step!

Hi everyone, currently in pain and feeling really fed up.

I had a laparoscopy in January and I was diagnosed with severe endo. They didn't remove any of the tissue as planned. I was told I need more open surgery to remove all the tissue and that it has spread all over my bowel and bladder. 😔

waiting to be seen in clinic by my consultant to discuss my next operation.

really scared and really want to try for children too. I'm 35 and worried I may need to go for IVF.

anyone been in this position ?? The waiting is so hard.

I'm going to join my local support group soon and find out as much as I can.

I'm trying to stay positive :-)

10 Replies

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  • Hi Missy, I can understand how you feel....please try and stay positive though. I have not been in your situation as such but, I do have severe Endo....my doc says I'm full of it. I had a lap April 2014, I was diagnosed with endo, large cysts on both ovaries. Unfortunately , my right ovary and tubes had to be removed, also my bowel was fused to my womb.....which is why I was suffering so many bowel problems at the time....bleeding, constipation, diarrohea, e.t.c.

    I am seeing my gyno tomorrow to discuss further surgery/treatment......... Take care Missy

  • Thank you. So many are going through this I can't believe it. All the best to you x

  • Hi elle15

    Thank you for your reply. So good to come on here and have so much support.

    everyone has a slightly different story so very interesting to learn so much.

    How did your appointment go?? I'm waiting to be seen, still no consultant appointment but so low waiting to discuss my surgery and future. Take Care for now x

  • Hi Missy , I do understand what you are going through. I've suffered severe endo for 22 years with many laps and 2 bowel surgeries. It's major for us but the consultants deal with this all the time and the 2 I've had have been amazing. No colostomy bag. My bladder has severe scarring too and stuck to the front wall. Means lots if wees but that's ok if annoying at night. I've just got used to it. I had a total hysterectomy along with my 2nd bowel surgery and bladder surgery 10 days ok as really looking forward to being me again after hot flushes etc pass (hopefully within 5 years). Yes I needed IVF , but not do. I was given 5% chance. I have 2 yr old twins. A miracle. I tried to remain as positive as possible thd whole time. Accepting what I had and how I could live with it the best I could. It wasn't alwYs easy as I suffered every day but it mainly got me through. I hope I have given you some hope. You may or may not need to go a different route to become a parent, but having endo usually do not mean a definite no. Good luck and I do hope they look after you well x

  • It's want to read after 'I had IVF, but many don't!!

  • Thank you. What a story and amazing you have twins great news. It's great coming on here and having support. All the best to you take care x

  • Hi Missy, I know this is an old post and a lot might have happened since then but I am just curious to know how things are for you now as I am in a similar boat. I had my 1st laparoscopy this month and nothing was removed, I have the follow-up appointment with my consultant later in September. Infertility was what made me find out I have endo in the 1st place and I still very much want children (trying for over 3yrs now).

    I have been accepted for IVF but I was told the cysts need to be removed before the procedure can start. I have very low FSH at 31yrs and everyday is a struggle to say the least.

  • Hi sorry for late reply.

    I had surgery for endo late August and recovered really well, thought I would be off three months but went back to work after 6 weeks.

    Today my drugs arrived ready for IVF hopefully start them next week.

    I have been on zoladex for last few months so no pain.

    How are you doing?? X

  • I am still hoping to start IVF treatment but a bit weary since nothing was done to the endometriosis they found. I have appointment with the consultant next month to see where we go from here....lonely, long and sad journey so far. I wish you the very best, please keep me posted...x

  • I know it's hard the journey is hell just try and stay positive! Will keep you posted! Let me know what your cons says xx

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